Published on Thursday, 01 November 2012 08:55
Written by Jules
Do you ever wake up drenched in sweat, a nightmare image still clear in your head? Is that nightmare of you, still very young, maybe only 43 or 44, being pushed in a wheelchair by your husband or daughter because you can no longer walk? That is a regular nightmare for me, and something I fear is not really too far afield from reality. At least not far if I don't do something soon about a pain that is regularly crippling me for days on end. Something I wish I could ignore, something I try to ignore, and have in fact done so now for almost a year. It may seem odd to the average person that a pain that makes one unable to even put one's feet on the floor would be something left only to think about in the torture of a nightmare, but when you live with chronic pain, in a world of "sorry we just can't do anything about that", it's all too easy to not think about doing something. It's all too easy to not want to put one's self in the position of hearing, yet again that you have something that can't be fixed. So ignore I do, put off I must. Almost to protect my sanity, I say to myself "it's better to live like this" than to live with a doctor's voice in my head telling me "sorry" yet again.
But, I promised myself that it was time. It was time to get things done for my health, I am embarking on two days of doctor visits that I am not looking forward to, and yet I am. For those of you who are Chronically Awesome, i am sure you know what I mean.
Each time we go to the doctor, we have the chance of finding something new. Either something new to try (which may or may not work), or something new that is "wrong" with us.
When a new doctor suggests we try something that will, in his or her opinion, really work to solve our pain or some other symptom, we look at them with the face of a skeptic. Often we have been told to try whatever it is they are serving up to us, or we are just tired of trying one more thing that most likely doesn't work.
Don't get me wrong, at least for me, I am willng to try new things, willing to experiment a bit to see if something new will really work. I would love very much to end or take the edge off of some of these symptoms that really hinder my daily life. Still, the skeptic in me takes over more and more of what used to be a much more positive person. After trying so much, I think most of my comrades in the pain club feel the same way.
The other side of the coin is that sometimes I do get VERY excited. I think "THIS IS IT! THIS is going to make me feel all better. I am going start this and in about three days I am going to feel better than I have felt in years." Why do I ever do that to myelf?
So, first things first. I am going to the OB/GYN. That is the annual exam with the added consultation for my long awaited hysterectomy. I tried the ablation for the painful and always growing fibroids, cysts, and polyps. Nothing stops those buggers from taking over the inner girly parts and making at least two to three weeks a month of my life misery in the cycle department.Here is some TMI for you. I had a period that lasted almost four years. We tried everything. I seem to always align myself with conservative OB/GYN's. I was under 40 throughout all of this, but unable and disinterested in baring more children. Why didn't we do the hysterectomy then? Why didn't we do it back in my early twenties when I was battling time and again with the recurrence of cancer in my cervix? It all had to do with my age and what insurance companies want docors to do with women under 40. Don't do THAT surgery and take THOSE parts out until you really really have to. Now that I am older, they seem very open to it, but I had to try the ablation first. Well, all those damned masses that don't belong in me were back in three weeks. Speaking of three weeks. I often have periods that last that that long.The following day I see both the orthopedist and the podiatrist.
The podiatrist will hopefully remove this thing that has taken up residency on my foot for a few years now. It's been there long enough to start paying rent. It impacts how I walk, how long I can stand, and what shoes I can wear. Best cae scenario it is some sort or wart they can freeze off, worsst case they have to excise a little deeper. We shall see. All I can think about for this appointment is ridding myself of a painful nuisance by causing more pain. Marvelous.
Now for the great mystery. The orthopeic wonderkind of So Cal, or so he is preported to be. Now, as smart as he is, and I have no trouble believing that, does he have a clue what EDS is? Many very wise doctors do not. What is my goal with this appointment? To seek relief of the pain in my hips and knees that is often paralizing. The photo to the left is of me trying to walk just a few steps down the hall with the pain in my hips. Using two canes and with the support of another person, I was still ravaged by pain. You can see the pain in my face. Not my usual self-portrait, in fact it's not a photo I would ever take of myself, and didn't. That's what the pain of EDS, Fibro, and Lupus can do to a person after walking a mere 10 feet with hips totally destroyed by a yet to be determined malady.
Do I think he can fix this? No, I really don't. Do I think he can get me some tests to confirm some things I think may be going on? Yes I do. And that is what I want: answers. I want to know if I have developed osteoarthritis from EDS. That is something he can probably fiigure out. With a more full piicture of what is going on, maybe my rheumatologist can do more.
You may ask why I don't have my rheumie run these tests. Well, that is a good question. I have decided to go well out of network to see the very best rheumatologist I could find. I see a doctor at UCLA that is the best of the best. I pay cash to see him, but if he orders any tests, I pay through the nose. So when these extras come up, I have to go through my HMO to get them done. What a pain. I can't get blood drawn at his on site lab, he can't order x-rays, do regular trigger point injections etc.
That reminds me, he wants me to see a pain doctor for regular trigger point injections. He gave me two the last time I was there, just to get me walking again, my hips were that gone.
I was also supposed to get a mammogram, but I willl have to schedule that for another time. I am driving to Orange County and staying there for the two days it will take for these appointments. I miss Orange County, it will be nice to be in my old stomping ground even it it's to be gone over with a fine tooth comb.
I am not, howver looking forward to dealing with this gauntlet of doctors. Oh yes, and my standing order of monthly blood work, I have to do that too.
There was a time when I was at some sort of appointment four days a week. This is, in part why I went on my doctor boycott for the few years I did it. Now here I am cramming 3 appointments into 2 days. Oy Vey.
I do have questions I would hope some of you could answer below.
1. If you have EDS have you seen an orthopedist and what did he or she do for you, what do you recommend me asking?
2. Have you had a hysterectomy since you have been diagnosed with your chronically awesome condition and did it help with pain?
3. Do you get trigger point injections? If so what points/how many and how often? Do they really help and for how long?
Thank you so much for your feedback, and I thank you all for always reading and being so supportive. Much love to you all. I will follow up after the marathon.
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